Getting to know our Team of Advisors – Letitia

You might recognize Letitia from her Patient Voice video and her PIPC guest blog, but did you know she’s also a member of the PatientsLikeMe Team of Advisors? Below, read what she had to say about living with epilepsy, her views on patient centeredness and all of her advocacy work. About Letitia (aka Letitia81): Letitia… Continue reading Getting to know our Team of Advisors – Letitia

A bold choice to fight epilepsy

As originally seen on the Tampa General Hospital News Center website It was scary enough for Letitia Browne-James’ parents to witness their child’s epileptic seizures. But they were also frightened when a doctor suggested brain surgery for their 12-year-old. “My parents said ‘no way,’” Browne-James said. “It was a very scary thought.” They tried medications,… Continue reading A bold choice to fight epilepsy

Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care

Many of you have already met Letitia. She’s part of the PatientsLikeMe epilepsy community, and from her Patient Voice video to Twitter (@Pulchritude81), she continues to be a rockstar when it comes to sharing her experiences and advocating for patient centered research. Her latest efforts focused on patient empowerment where she headlined a webinar with our friends at… Continue reading Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care

PatientsLikeMe members to be highlighted in patient empowerment webinar

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar. On Tuesday, January 20th, at 2:00pm EST, the Partnership to… Continue reading PatientsLikeMe members to be highlighted in patient empowerment webinar

2014 recap – a year of sharing in the PatientsLikeMe community

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys… Continue reading 2014 recap – a year of sharing in the PatientsLikeMe community

Getting to know our 2014 Team of Advisors – Becky

So far, we’ve introduced you to two members of the PatientsLikeMe Team of Advisors – Dana (bipolar II) and Lisa (Parkinson’s). Today, say hello to Becky, a retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer. About Becky (aka Rebelor) Becky is a former family nurse practitioner,… Continue reading Getting to know our 2014 Team of Advisors – Becky

What’s your epilepsy story?

That’s what everyone’s asking this November during National Epilepsy Awareness Month.  If you’ve been diagnosed, or know someone living with epilepsy, put on your brightest purple clothes and start raising awareness for this neurological condition. What are three things you need to know about epilepsy? 1 It’s a condition that affects the nervous system and causes… Continue reading What’s your epilepsy story?

The Patient Voice- Epilepsy member Letitia shares her story

    What would you do if you were living with seizures from epilepsy since you were ten years old? And you weren’t even able to drive a car? Letitia turned others living with epilepsy on PatientsLikeMe and shared about her journey in a recent video. Watch above to see her inspiring story, and how… Continue reading The Patient Voice- Epilepsy member Letitia shares her story

Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at… Continue reading Patients as Partners: The Perceived Medical Condition Self-Management Scale questionnaire results

Raising awareness for epilepsy in many different ways

November is often seen as a month of transition – autumn gives way to winter, the holiday season fires up, and our short sleeves disappear for warm coats and sweaters. And as many of you know, November is also National Epilepsy Awareness Month. Many different organizations focus on epilepsy throughout the year, but this November,… Continue reading Raising awareness for epilepsy in many different ways